Trisomy 18 Foundation

General Organizational Information

Organization Name:

Organization Acronym:

T18F

Year Established:

2002

Type of organization:

Condition(s)-specific International

Mission Statement:

We envision a world where Trisomy 18 is a preventable and treatable condition and all parents have access to compassionate, knowledgeable care that respects the humanity and potential of their child diagnosed with Trisomy 18. We work to bring this vision into reality through commitment to our mission: to guide the search for a cure and treatments, to educate and support health care professionals, and to create a caring worldwide community for affected families.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

Yes

501(c)3 Status?:

Yes

Paid staff?:

Yes

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Trisomy 18

Birth Defects

Chromosome 18 Translocations

Developmental Disabilities

Pervasive Developmental Disorders

Pregnancy Loss

Pregnancy Loss - Termination

Edwards Syndrome

Chromosome 18

Chromosome 18, Tetrasomy 18p

Chromosome 18, Trisomy 18p

Chromosome 18, Trisomy 18q

Chromosome 18p-

Chromosome 18q-

Chromosome Anomalies

Chromosome Duplications

Chromosome Mosaicism

Chromosome Translocations

Congenital Heart Defects

Microcephaly, corpus callosum dysgenesis and cleft lip-palate

Ventricular septal defects

Wilm's Tumor

Mental Retardation

Mental retardation short stature hand contractures genital anomalies

Patent ductus arteriosus

Partial agenesis of corpus callosum

Agenesis of the Corpus Callosum

Organizational Contact Information

Title:

Executive Director

Degree:

M.A.

First Name:

Victoria

Middle Initial:

Last Name:

Miller

Address:

4491 Cheshire Station Plaza Suite 157

Dale City, VA, 22193

Phone:

+1 810 867 4211

Email:

t18info@trisomy18.org

Website Address:

http://www.trisomy18.org

Resources and Services Provided

Languages spoken:

English

Spanish

Printed materials available in:

English

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Parents

Fathers

Mothers

Siblings

Grandparents

Health care professionals

Researchers

The public

Teachers

Students

Media

Legislators

Range of services include:

Referrals to research studies

Referrals to matching individuals/families

Peer Support

Professional counseling

Peer-to-peer counseling

Grief counseling

Genetic information

Referrals for non-medical services

Non-medical services

Financial referrals

Political action

Awareness Programs

Advocacy

Training

Speakers

Telephone helpline

E-mail list

Chat room

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Website

Newsletter

Journal articles on condition

Slides

Research updates

Video(s)/Movie(s)

Resource guide

Conferences/workshops for:

Affected individuals and/or families

Public

Researchers

Professionals

No Revisions:

I have reviewed my listing and there are no updates to be made at this time.